Friends In Need

Families Struggling To Cope With Aids Turn To Volunteers For Old-fashioned Sense Of Community

September 11, 1998|By Olivia Hawkinson, Tribune Staff Writer.

Vera Rodriguez was at the end of her rope. Her husband, David, was dying of AIDS. She was caring for two preteen children at home and an infant granddaughter. With no car, she had a hard time getting to the grocery store, the laundromat and the doctor's office. She just needed someone to listen. She had AIDS.

It was two years ago, and the Rodriguez family had been invited to Camp Getaway, a weeklong Wisconsin retreat for families living with HIV and AIDS, run by the AIDS Pastoral Care Network, a Chicago non-profit organization.

"I was hysterical because my husband had gotten really sick right before we left," says Rodriguez, 41, a Chicago native living in the Uptown neighborhood. "Dementia had set in. He was doing things like getting lost on the `L.' It was miserable. He couldn't remember who he was. It was just very, very hard.

"I was at camp, and I'm sitting there crying my little butt off to everybody. I'm telling this whole story how I'm losing my mind. I'll never forget, this woman named Marilyn came up to me and puts her arm around me and said, `Vera, I have just the thing for you -- it's called Communities of Care.' "

The woman was Marilyn Rauch, a volunteer trainer for the AIDS Pastoral Care Network who helped write the first training manual for its Communities of Care program. Launched in the late 1980s in New Orleans, the program has been popular in Oklahoma, Arkansas and several other states in the South and Southwest.

Communities of Care pairs a "care team" -- 7 to 10 people in a faith community, often from one church or synagogue -- with a "care partner" -- an individual or individuals in a family living with HIV or AIDS. The mission of the team is to provide compassionate, non-judgmental care to the family -- not medical attention but rather what is called "secondary care," such as rides to the doctor or the opportunity to talk to someone.

"The team can't pay your rent or cure your disease, but we can offer emotional and spiritual support," Rauch says she tells prospective care partners.

The idea behind the local Communities of Care, which started in 1996 with the Rodriguez family among the pilot members, is to give needy Chicago HIV/AIDS patients and their families a kind of surrogate neighbor or family, says the Rev. Frank Anderson, Camp Getaway director.

The volunteers say they are filling a void left by eroding family and community traditions as well as decreased government support for the needy. And when a disease is as stigmatizing as AIDS, Anderson adds, the old notion that neighbors and relatives will take care of one another often disappears entirely.

"If you're worried that your neighbor is going to burn your apartment out because they found out you have HIV/AIDS, you're not going to share that information," says Anderson, also the pastor of St. Timothy's Lutheran Church in Skokie.

Even the rare AIDS patients with supportive families have a hard time asking for all the help they need, says Dan Lunney, coordinator of the network's volunteer services.

"I do have family, but families are busy," says Rodriguez, who with her husband was diagnosed with HIV in 1991, after six years of marriage. "Families aren't like they used to be. When someone got sick, they'd take care of them. We're just not that type of community any more."

All of the 16 families making use of the local Communities of Care program struggle with poverty, and most of the infected adults are recovering drug addicts, says Lunney. The majority are single-parent families headed by a woman, he adds.

Unless care partners bring it up or ask for involvement, religion is not forced on the care partner, Lunney says. Many times, in fact, the religious affiliations of the care partners and the care teams do not match up, as the first priority is geographical proximity.

"A lot of the patients start out very skeptical," says Rauch, 50, now in the ordination process at McCormick Theological Seminary in Chicago. "They expect the team to be Bible thumpers and lecture them about their lifestyle. This is not a tool of evangelism. A lot of them have said (Communities of Care) was the first positive experience they ever had with religious people."

Vera Rodriguez and her family are paired with a care team from the Fourth Presbyterian Church in Chicago, which had been looking for a way to get involved in AIDS ministry. The church has since added two more teams to the program.

"I thought, `This isn't going to work,' " says Rodriguez. "Fourth Presbyterian is a wealthy church in Chicago. Here we're on Social Security and welfare, and I was just thinking, there are going to be a lot of cultural differences. I'm Irish and Mexican. My husband was Mexican. He was still very much into his machismo Mexican stuff, and there were a lot of gay men on the team."